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The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFSis worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World. And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

Fibromyalgia is disabling (duh!) and has a greater impact on functional status and well-being than other chronic diseases such as cancer, says a UK public health researchers report. The emotional burden of FM is felt by lay carers as well as sufferers.

The study aimed to investigate the functional status and well-being of people with ME/CFS and their lay carers, and to compare them with people with other chronic conditions. Since GPs may refer to cases of ME/CFS by different names, cases that had been diagnosed by GPs with any of the following: chronic fatigue syndrome (CFS), ME, post-viral asthenic syndrome (PVAS), fatigue syndrome (FS), fibromyalgia (FMS), post-infectious encephalitis (PIE) and post-viral fatigue syndrome (PVFS), were included in the study. Patients were considered as potential cases if any of the above diagnoses appeared in their individual electronic medical records.

As we know, diagnosis of our condition is largely based on clinical history, and exclusion of identifiable causes of chronic fatigue. Characterization of cases and the impact of interventions have been limited due to the diverse clinical nature of the condition and a lack of reliable biomarkers for diagnosis and outcome measures. The well-being of family members and those who care for us are also likely to be affected.

The functional status and well-being of a well characterised sample of individuals was measured using SF-36, a widely used and well-validated instrument, which provides generic (i.e. universally-valued, and not specific to age, disease or condition or treatment) measures of disease impact on physical, physiological, social functioning and roles. Unlike disease specific measures, SF-36 can be adequately used for comparisons between people with a range of different conditions.

The scores for the Physical and Mental Health Component summaries and the scales within each of these domains were considerably and consistently lower in people with ME/CFS, when contrasted with individuals with a range of other chronic diseases. This demonstrates that ME/CFS is not only physically disabling, but also has a significant impact on mental health.

The results of the study highlight the disabling nature of ME/CFS (Just wish our social security departments were given a copy of the report!). However, the lack of bio-markers and the fluctuating nature and lack of specificity of symptoms makes disease characterisation and disability assessment challenging.

Quality of life is inversely related to distress, disability and loss of function, and is associated with the ability of individuals to remain active and perform roles in society. A major goal of people with chronic diseases is to achieve effectiveness in life and to preserve function and well-being. However, people with ME/CFS are (generally) failing to achieve these goals, and their carers’ emotional well-being is also being affected. Recognition of the level of disability faced by us is essential for planning support services that adequately meet our needs.

***I apologise if this was difficult to read – but you should see the actual study! I tried, as best I could, to use ‘normal’ English.